What is Pediatric Palliative and Supportive Care, with Abby Rosenberg, MD, MS, MA

October 5, 2023
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In this podcast, Dr. Abby Rosenberg discusses what parents and family members of children with cancer should know about palliative and supportive care. She addresses the way palliative and supportive care is different from hospice or end-of-life care, what to expect when meeting with the palliative and supportive care team, and the ways this type of care can support children with cancer and their families.

Dr. Rosenberg is the chief of pediatric palliative care at the Dana-Farber Cancer Institute and Boston Children's Hospital in Boston, Massachusetts.

Transcript: 

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In this podcast, Dr. Abby Rosenberg discusses what parents and family members of children with cancer should know about palliative and supportive care. She addresses the way palliative and supportive care is different from hospice or end-of-life care, what to expect when meeting with the palliative and supportive care team, and the ways this type of care can support children with cancer and their families.

Dr. Rosenberg is the chief of pediatric palliative care at the Dana-Farber Cancer Institute and Boston Children's Hospital in Boston, Massachusetts.

View Dr. Rosenberg’s disclosures at Cancer.Net.

Dr. Rosenberg: Hi, my name is Abby Rosenberg. I am the chief of pediatric palliative care at the Dana-Farber Cancer Institute and Boston Children's Hospital. And today we're going to be talking about what pediatric palliative care is, maybe demystifying it a little bit, and more importantly, talking about how it can help kids with cancer and their families.

I think one of the most important things to know about palliative care is that it is a specialized kind of medical care for people who live with serious illnesses like cancer. And folks who are receiving palliative care are receiving extra support to help them with complicated symptoms, pain, distress, as well as complicated decisions that they might need to make in the process of their illness.

Palliative care is really intended to help enhance a person's current care by focusing on their quality of life, and not only the patient's quality of life but also the quality of life for the whole family. In pediatrics, that includes parents, siblings, and other kids who might be members of the community. The way I think about palliative care is that it is really intended to help people live their best lives for as long as possible. And so with that in mind, it can really help a whole bunch of people who are affected by pediatric cancer.

And the way we do that is by delivering help through what we call an “interprofessional team.” And so a palliative care team in pediatrics includes physicians, it includes nurses, includes advanced practice providers like nurse practitioners, it includes social workers. It may also include child life specialists, psychologists, chaplains, other folks who are involved in the child's overall well-being.

Palliative care can be provided at any time in a child's cancer experience and anywhere. It can be delivered while you are in the clinic, while you are in the hospital staying overnight, and we can deliver it to you at home.

Some people confuse palliative care and hospice care, and those are 2 different things. So palliative care can be delivered concurrently with cancer-directed and cure-directed therapy.  And generally, when we talk about hospice, it is for patients and families who have started to understand and recognize that perhaps their cancer might not be curable, and they are making the courageous and loving decision to switch gears and focus more on quality of life without continuing cure-directed therapies. Hospice care, like palliative care, can be delivered in a bunch of different settings. And most times in pediatric hospice care, we think about delivering it to a child in their home and within their home community.

Some of the things that parents often ask us when we're talking about palliative care for their kids with cancer is, how do I know if my child is ready? And how do I ask for it? The answer to the first question is that again, your child can be ready for palliative care at any time. And it's really intended to help you navigate the heart of having a child with cancer. And that can, again, include anything from making complicated decisions, processing complicated information, making plans for you and your child's future, and managing complex pain and symptoms. How you ask for it is in most pediatric cancer centers, there is an embedded palliative care team that can help you. So you can ask any of your doctors and nurses and other folks who are taking care of you and your family.

The last thing I'll say about palliative care is that it is a subspecialty team of experts who are good at all of these things like communication and pain and symptom management. Most pediatric oncologists do what we call primary palliative care, and that is they help support you in all of these things, too. So they help talk to you about complicated decisions and upcoming plans. They help talk to you about what might be coming with your child's symptoms, and they really help you navigate the cancer experience. And so what we try to do in pediatric palliative care is partner with you and your oncology team so that we just become a bigger team, thinking more holistically about all of the ways we can support you and your family. I think, in the end, the message of all of this is that every person taking care of a kid with cancer is trying to help that kid to thrive. And pediatric palliative care can be a really important resource to help kids to do that to the best of their abilities.

So another question that we can hear from parents and families is what to expect when the palliative care team gets called. I think at a minimum, the expectation is that you will meet more people who will be really curious about your family and your child. They will ask a lot of questions about what matters to you, what are your values. They'll ask you questions about what is happening with the child's illness, what are your worries, what are your hopes, and what they do with all of that information is they help you process it, and they help translate it into something that can work for your child's overall cancer care. Part of meeting a palliative care team is always meeting all of these different members of the team, so you'll meet doctors, nurses, nurse practitioners, social workers, perhaps chaplains, child life specialists, psychologists, all of the folks that I previously mentioned. And the reason we have those big teams is because we recognize that each member of that team can help you with a different part of your whole cancer experience. And so for example, if your faith and your spiritual community is a really big part of how you are coping with being the parent of a child with cancer. We want to connect you with that part of your own strengths and resources and figure out how to support you while you are under our care in the hospital setting.

So one other thing that pediatric palliative care teams can help with is talking within your family. So sometimes we get questions about how do I talk to my child about what's happening, or how do I talk to my child's brothers and sisters about what's happening? Maybe it's a, how do I support their brothers and sisters? It could be about the challenges of being a parent with one kid in the hospital and others at home, and how do you maintain your identity as a parent? How do you still be a good parent to a large family when you have one child who's really sick with cancer? And we in palliative care really can help you with that with all of the different resources and team members that I mentioned, and we can help you talk to your other kids. We can help your kids talk to each other. We can help you think as a parent about how you can navigate the situation that no parent could ever have planned for until they're in it. The other thing that we do within palliative care and the other thing you can expect is we partner very closely with your oncology team, not to replace them or make decisions on their behalf, but more to help them know you better. And so what we do is we talk together about what we are hearing from you, about what your child might need. We provide advice, we provide recommendations, for example, for how to manage perhaps complicated symptoms. We might have conversations with you and your oncologist together in the room to think as a bigger team about how we can support your child's well-being. And we'll often ask you questions in the midst of all of this about what you think is important for your child, how you want to spend your time, how you define your child's quality of life, and how we, as a larger program, taking care of children with cancer, can do better to make sure your kid is thriving for as long as possible.

ASCO: Thank you, Dr. Rosenberg. Learn more about palliative and supportive care at www.cancer.net/palliative.

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